Bliss advent calendar day 20

For Monica and her husband Rishi World Prematurity Day on 17 November 2016 was a cause for real celebration as their daughter Ria, who was born at 23 weeks, celebrated her first birthday and is thriving. Monica explains how the family integrated care they received made all the difference:

Our little Ria was born on 9 September 2015, in Leeds General Infirmary weighing 1lb 3oz. I had gone into hospital 3cms dilated two weeks earlier but with an emergency stitch I managed to keep her in until I was 23 weeks pregnant. I went into full labour and she was delivered 12 hours later. I had septicaemia so the birth was a bit of a blur. My placenta was stuck and was only removed seven hours later. During this time Rishi stayed by my side. I wasn't able to see Ria for two and a half days after she was born because the doctor’s thought I had CDif (a serious bacterial infection).

I was worried I wouldn’t see Ria alive and it was absolutely heart-breaking.

Whilst I was in isolation, Rishi spent a lot of time with Ria, even though he was torn between the two of us. But I didn't want Ria to be on her own. If she wasn't going to make it, I didn't want her to be with strangers.

She was in hospital for three months and three weeks (103 days), but came home 11 days before her due date.

That's almost unheard of for a baby born so premature. Our little one is quite feisty though, and she was out to prove everyone wrong. I believe the other major factor to Ria doing so well was being part of the family integrated care (FIC) at St James's Hospital, Leeds. When she was transferred there, we couldn't stop smiling. We had heard about FIC and the autonomy it gave parents. You go from feeling like a spectator, not even being able to take her temperature, to 'just crack on'! It was fantastic. We finally felt like parents.

To be part of the FIC scheme at St James's you have to commit to be able to care for your baby for a minimum of six hours a day. We spent about 14 hours at the hospital each day so we qualified to be part of the scheme. We were probably the doctors’ and nurses’ worst nightmare, they used to force us to go home. If we had the energy, it was going to be spent with Ria. I always thought that if she hadn't been born so early she'd have been in my belly, hearing my voice. So I wanted her to hear my voice as much as possible whilst in hospital.

It has been shown that babies do better with FIC, and that's partly because of the consistency of care they receive. Plus the fact, you're always going to be extra careful with your own baby. Before we got into the FIC system, I would watch someone take her temperature, change her position, probes or nappy and think “I wish I could do those things for her”. Family integrated care meant we made up all her feeds and drew up her meds to give them to her ourselves. We changed her nappy when we wanted to, changed her outfits, changed her nasal gastric (NG) tube and nasal prongs, but the best part was picking her up for a cuddle whenever we wanted. We were given the autonomy to look after her and tell the nurses how she needed to be cared for, even when we weren't able to be there.

Ria was just over six weeks old before Rishi got to hold her. But then on his birthday last November, he gave Ria her first bath. It was the best birthday present – he did everything for her that day, got her out of the incubator, and gave her a two hour cuddle. He finally got to feel like her Dad. We would have been terrified when she came home if we hadn't been so closely involved in her care in hospital. Breastfeeding had been very difficult because she kept having brachycardias and turning blue due to reflux. It was so scary, she eventually ended up on reflux medication and special milk. Putting the NG tube in was quite scary because I had to pass a test to show I could do it before we would be allowed to take her home. It was either ‘man up’ or she stays in hospital longer. I opted to man up!

Because of the family integrated care, we were much more prepared for going home. Babies pick up on all sorts of stress and it made the whole experience calmer for everyone involved because we were able to recognise what was happening and know what to do.

We were so lucky to come home with a thriving 23-weeker. Tragically for 75 per cent of those babies, it doesn't end up that way. Ria had heart surgery to have her PDA ligated at six weeks old. After her surgery, she came off the ventilator just five days later.

Ria came home on oxygen but came off it completely in February, just two months later. We were expecting her to be on oxygen for about a year, we were so pleased. Ria has a slight weakness down her left side due to a Grade 3 IVH ( intraventricular haemorrhage) which potentially means she will have cerebral palsy. After intensive physiotherapy she is now moving her 'weak' left arm more than her right arm! She needed laser treatment for retinopathy of prematurity, but at her last check up her eyes were fine. Our beautiful daughter is a miracle and we are so proud of how far she has come. She is a true fighter.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk